I'm feeling frustrated and so full up of useless information that nothing else will fit. We need to decide what to do about fertility. The useless onco sent me a copy of her letter to the gp and surgeon saying we had a 'detailed discussion' (ha!). It also said there was a very small chance of amenorrhea and reduced fertility. The great - but private - onco that we spoke to said 20-30% chance I would become menopausal with chemo. Got a letter from Fertility assoc saying they estimate 30-40% chance of menopause. Noone seems to know whether 15 years of the pill has made a difference and kept me with a greater ovarian reserve or not. Everyone says take GnRH to help protect my ovaries, but none of them know whether that will work or not. The results of my AMH bloods, that tell me my 'reproductive age', have taken ages to come back, my cycle has started without us making a decision and so if we want to go down the $11,000 path of ivf, then chemo has to wait another month.
My brain hurts and I haven't yet begun on the 12 pages from medsafe about epirubicin, or the 34 pages about cyclophosphamide - got disheartened and didn't look for any more.
Our wonderful donors are doing a great job, but we seem to be scraping by on the skin of our naked wee bum (Bastians, not mine!) and often the milk that is in the freezer is only a days worth at a time. What I need is someone who has a well baby with 20 litres in their freezer (!) - not that I am in any way ungrateful for what we have. To have come so far on the generosity and time of other people is incredible, I just worry.
I am beginning to think there is no way I am ever going to be able to make an informed decision about chemo and fertility and oncologists, and pre-schools (our playcentre doesn't have extended sessions) and I have a hungover husband with the squits, 2 children spewing non-stop, a wee boy allergic to sleeping with a burst eardrum again and a cough. I have the worlds most throbbing headache, I'm cold and dehydrated, I haven't had a reasonable sleep for about 2 months (all I ask for is 5 hours total, I don't mind broken sleep - I'd just like some...), I'm going in for another general on Friday and to top it all off so nicely, I have my period. Oh, I nearly forgot - I have breast cancer too....
sorry. feeling a little bla today............
Awwww... ((((((hugs))))) from Northern California. You are entitled to feel some down feelings, I think it's probably healthy seeing what you are going through. Such big decisions, on top of all the normal parenting/ spousal issues! It seems as though sleep should be a priority- are you able to nap during the day at all? Can you get a young girl in to watch the kids here and there so you can rest? Thinking of you and sending energy, light and love! Chris xo
ReplyDeleteI could always start expressing for you Jaynie. I have a happy healthy bonny baby who is moving onto solids more each day and leaving me with extra milk. I would just need the bags to put the milk in.
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Vicki
You are one amazing woman. Feeling down is part of life and you certainly have a right to those feelings - as if one needs a right.
ReplyDeleteGod bless.
Jaynie, I taught Charlie and Raife at Little dippers while you were pregnant with Bastion. When I saw you in the paper sharing your story, I just remembered you and your awesome boys at the pool. My youngest self-weaned 6 months ago at 18mths old. I wish I was still lactating and I hope so much that there is someone out there up here in Northland with an abundant milk supply who is willing to supply Bastion with extra milk so you don't have to worry so much.
ReplyDeleteHi Jaynie..I'm just hoping my package got to you by now. You have my sympathy. I remember years ago when my five were 10,7,4,2 and 0, we had just moved into a new house, the yard was mud and the kids and I all had diarrhea..but no breast cancer..and that was the pits. I remember just sitting in the winter sun in our new dining room one morning all in pj's just doing nothing 'cos there wasn't enough energy to do anything. You muddle through sometimes..just the best you can..and you know..that is enough!
ReplyDeleteHang in there Jaynie, you are an amazing women and it is amazing to me that you have the strength and energy to even contemplate reading those data sheets. They're not exactly light reading! Here's hoping that your family is on the mend and that you are able to get that much needed sleep.
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ReplyDeleteHoward packer